Blind on the Short Bus

Doesn't the title of this post sound like a country song? Feel free to use it if you're ever composing something that fits. I'm generous that way and I've always wanted to show up in someone's liner notes.

According to my new neuro-ophthalmologist I am certifiably visually impaired. I have a signed form that qualifies me for the MBTA Ride--think short bus for grown-ups. Yup, I'll be on the short bus with all the little old ladies going to Walmart and the people in wheelchairs going to work...as soon as the Commonwealth of Massachusetts processes and approves my application. Knowing my wonderful state government, that will not be a speedy process.

I was becoming a danger behind the wheel--convincing myself that I could see well enough to go to the store when we needed milk, etc. So, I decided to talk to the neuro-opthalmologist and take myself off the rode if he agreed. It's better than having the Registry of Motor Vehicles make the decision for me. Or worse.

I wouldn't want to be crossing the road with my children with someone with my eyesight behind the wheel. I'm relieved and I'm sad.

Monthly Infusion #1

I wrote this on 12/2 and forgot to post it. Woops! I guess that's a good indicator of how I've been. Scattered and sleepy. My December insomnia has kicked in full force which triggers all my MS symptoms. I've dropped a full gallon of milk, many cups of coffee, and I keep feeling like my hands and feet are asleep. I've turned the tides, though, and slept 7 hours in a row last night!

Today was the first of my monthly Solumedrol infusions at the new MS clinic. The best part was that they had wireless so I was able to answer work email and play a little Wordscraper during the infusion. Ok. The Wordscraper part was fun. The work was...well...work.

My nurse was Debra (that's her headshot from the Website but she is much more animated in person). She was very nice and knew her way around an IV. Good thing, too, since I only let them screw up once. I learned how to set that boundary when I became a pin cushion during my 5 1/2 week stay at the Villa de New England Medical Center when I was waiting for Zane to be born.

But I digress. It was really nice to know that all the other people in the room had MS. Well, sort of. It wasn't that fun seeing the people in wheelchairs and with canes, wondering if they were once mobile like me. Just for today, though, I walked in on my own power and was only infused with the steroid medication and not the controversial Tysabri (MS drug linked to fatal brain infections) or any other meds with heavy-duty side effects.

Not that Solumedrol doesn't have its own list of side effects but, as far as I know it hasn't killed anyone. For me, I sometimes get a headache, a metallic taste in my mouth, increased body temp, and a surge of energy. The drug literature includes a really scary list of additional side effects like hair and bone loss but so far, so good, for me. (Although hair loss wouldn't be awful if I could concentrate it on certain body areas.)

But I'm done and don't have to go back until after Christmas.

Another M(ind) S(parkles) Consultant

"Lazy Julie's MS, meet the new Brain Doctor. New Brain Doctor, meet the lesions on Lazy Julie's brain and spine. Talk amongst yourselves. Topic: Multiple Sclerosis."


My new neurologist is Dr. Rocio Lopez-Diego with the Partners MS Center in Brookline. She is a she, which is very exciting for feminist me. Fair or unfair, I connect better to women doctors and, since I'm in it for the long haul, I think it's ok that I'm choosing someone in my comfort zone. She is also young, direct, honest, positive, hopeful, and says she's not afraid to treat MS aggressively. She prescribed yoga three times a week, in addition to my Rebif, lots of calcium and Vitamin D, and monthly solumedrol infusions. According to Dr. Lopez-Diego a person can't "use up" all the benefits of solumedrol if they get too many treatments as I had previously believed.


While I'm very excited about the new neuro, the MS Center where she works, and their teamwork approach to my treatment, I feel the need to be somewhat cautious with my enthusiasm. I remember writing about how much I loved His Majesty Dr. Misha Pless after our initial appointment. During our second visit, however, he told me that he might not be the right neuro for me if I wasn't willing to follow his every directive. I'm no longer a big fan.


When Dr. Lopez-Diego reviewed my records and MRIs, I had another episode of SOD (Sudden Onset of Denial). For about 45 seconds, I wondered if she was going to tell me I did not have MS after all and that it was all one really massive medical mistake. I pictured the ensuing court case, the insurance settlement, and the awkwardness of telling everyone, "Just kidding! No MS here...I really am just lazy!"


Nope. I still have MS.

MS Activism

Click on this link or the image above to read about the two-year wait before people can qualify for Medicare after they are deemed disabled.

My kidneys have MS, too

I heard a story about a 15-year old girl who needs to have a kidney transplant in order to live. Her mother put the word out via her blog, Twitter, and other social networks. I thought about how I was using social networking in a similar way to beg for Inauguration tickets and I felt humbled...so humbled, in fact, that I wrote to the nurse at the hospital that was managing the girl's possible kidney transplant to find out if a person with MS can be a kidney donor.

And that's when I found out that I not only have a defective brain, but substandard kidneys as well. Multiple Sclerosis is on the list of contraindications.

How about you? Do you have a spare kidney? Apparently, you only really need one. Visit the link above to see if you could become this family's hero.

Random Treasures and Trash from the Web

I've been surfing a lot lately and finding some cool stuff I felt like sharing.

• Hillary Clinton just accepted President-Elect Obama's offer to be Secretary of State in his administration. Thoughts?
  
• I saw this YouTube Video right after paying bills online. It's cute...or maybe it's just me...?
• Really Bad Parenting Advice has this article about children's birthday parties.
• The Office Max Elf Yourself is back in time for Christmas. I will, no doubt, be posting a Lazy Julie version at some point.
• I googled "forgiveness" recently and found this cool site.
• I joined a group on Facebook called Asking Michelle Obama to Wear Orange to Fight MS and I'm having fun searching for beautiful orange clothes and accessories for our elegant new First Lady to wear.
• I'm getting very excited about the Inauguration and I've decided to go to DC for the festivities. Liz lives in nearby Alexandria and Donna will be coming in from LA. Whether I will be standing on Pennsylvania Avenue freezing while I watch the motorcade go by or shaking President Obama's hand at an elegant ball while wearing the purple dress, I do not know but I'll be in good company, according to this article. I have already written to the two Massachusetts US Senators; my U.S. Congressional Representative; my Governor (who is a Facebook friend no matter what my friend Diane says about it just being his administration's account); the Obama transition team at Change.gov; everyone I know on LinkedIn, Twitter, and Facebook. I am sending the Universe a message loud and clear that I want to be at the Inauguration in whatever capacity I'm supposed to be there and trusting that social networking will not let me down!
  
• One of my favorite bloggers, Terrible Mother, wrote a post with an image that will forever be branded in my brain. Hmmmm. Maybe a new lesion will block the image. Yet another upside to MS!
  
• I recently bought this MP3 album and I'm loving it! It's getting me very excited for Obama's inauguration on January 20 (60 days away!). It has a variety of music interspersed with clips from Obama and Martin Luther King, Jr.
  

Blondes Get MS Too!

Women Against MS Fashion Plates 2008

The Women Against MS Fashion Plates fundraiser was Friday and it was wonderful. The room was packed with people who purchased tickets for $100 a pop, with all the proceeds going to the Central New England Chapter of the National MS Society. Attendees also purchased hundreds of raffle tickets to win some fabulous prices donated by area vendors.

Christina, one of the sisters in my heart, bought a ticket for Ruby so she should attend the event. Diane and Karen Teacup were her chaperones. Ruby had a fabulous time and I don't think it was just because she had the day off from school and took home a Lord & Taylor gift bag. She was very proud of me and I was so happy and grateful that she could be there.

I heard that the food was delicious and I know the models were wearing some pretty incredible clothing loaned to us by Lord & Taylor. We also had a team of hairdressers and makeup artists backstage to make all the models look even better than our best. All the Lord & Taylor dressers and the Women Against MS committee members were lovely and very, very helpful. From what I saw on the video, Channel 5 Newscaster Liz Brunner did a fabulous job as an MC.

All the women honored at the event were interviewed for the Real Stories of Real Women with MS. Our photos and quotes from the interviews were on large screens and framed on tables around the room.

With a lot of help from a lot of friends, I quieted the mean voices in my head (You're fat, you didn't sell enough tix, etc.) and had a ball! I asked the Universe to allow me to suck every joyous moment out of the day and to be aware of all the blessings coming my way. It worked! I was fully and completely PRESENT and it was a gift.

This was my first outfit. When I stepped up onto the runway, I couldn't believe how many people were in the room.

The crowd cheered when I showed off the very cool sleeves on this jacket. Like a good ham, I took that as encouragement to strut my stuff.

While preparing for the fashion show, I met so many wonderful women with MS who, like me, try to be positive and enjoy life to the fullest. MS affects each of us differently and, although we can't control what it does to our bodies, we share a common goal of not letting the disease sap our spirits. I was humbled and inspired by their beauty, on and off the runway. I look forward to staying in touch with these women and joining the event committee for next year's Fashion Plates fundraiser.

All of my "fashion photographers" took only pictures of me and the supporters at my table. As soon as I get the video translated into digital form, I will post it and you can see all the gorgeous woman who shared the runway and the honor of the event with me.

Ruby was my personal fashion photographer standing at the edge of the runway. Ruby wanted me to give her the "Z-snap" which I did and then all the other models snapped at her, as well. She was thrilled.

This was the snap for Ruby. See the hand at the bottom? That's Ruby's.

Ken liked this tweed suit a lot but the binder clip holding my skirt up made it a little more booty-liscious than it was supposed to be.

You can see who's the real model in the family.

This black number was the final "look" of the show. It was a very Jackie O like black dress with a jacket that I took off half way up the runway to show off the results of my recent bra fitting. I was amazed by my own cleavage! All the other models joined me on stage for a final stroll in a big circle on the runway. Diane's camera has a delay, you get to see the booty shot.

I think this was taken before the show began. That's my bald, hot boyfriend, Ken, with Ruby and Karen Teacup.

Ruby was very excited to bring home the centerpiece. She gave it to her Dad's fiance as an engagement gift and...you know what? I smiled and said, "What a great idea, Ruby!"

If anyone has an extra ticket to one of Barack Obama's Inauguration parties in DC, I'm available and I think this Anne Klein raspberry sheathe cocktail dress would be perfect for the party. I will not, however, be bringing along the $500 Kate Spade bag.

It took several tries before Ken stopped goofing off with his tongue in my ear for this shot after the show in my much cheaper clothes.

Lazy Julie with some of my supporters, Ken, Ruby, Diane, and Teacup. Andrew and Tim were at a different table and many, many friends were there in spirit, supporting the question of the MS Society to find a cure for MS and holding my hand on the catwalk.

Ready for the Runway!

This afternoon, I went to my fitting at Lord & Taylor for Friday's Fashion Plates show. It was amazing! For the first time in my 44 years of life, I did not look at price tags before bringing clothes into the dressing room! (I did, however, glance at a few tags after trying on some items and WOWZA! I could have paid my rent with the outfits we rejected. )

Another first: I didn't pick out any of the clothes that I tried on. I was accompanied on my "shopping" expedition by a representative from the Jones New York and Anne Klein collections. The lovely woman named Lisa had a sister with MS and was donating her time to the event.

I get to wear four different outfits in Friday's fashion show and I am going to look AWESOME if I do say so myself. One dress is so gorgeous that I've decided I will buy it and wear it if and when I am invited to one of Barack Obama's Inauguration parties. So, if you want to see me in the dress and you will not be attending the fashion who, you need to bring me as your guest if you score tickets to one of the January 20 Obama events in DC.

I really enjoyed meeting several of my fellow real women with MS models. It's so not true what people say: We models are not coniving bit%&es!

So, stay tuned for photos and maybe even a video of my walks down the runway. Shoulders back, chin parallel with the floor, one foot in front of the other, swing my arms, and strut it like I mean it!

Happy Veteran's Day!

I am a pacifict so I always feel a little conflicted on days that celebrate the military. But I now realize that Veteran's Day doesn't do that. It celebrates the people who serve in the military. I love them, I love my country, but I hate war. Here are some suggestions/observations for my fellow peacenicks on Veteran's Day:

Great article about Veteran's Day.

Anti-War Veteran's Day Events

We have a War Office; why not an Office of Peace?

And a big shout out to Diane's son Dave who is serving in Iraq right now. Be safe.

I'm taking a refresher course in the healing power of gratitude. Care to join in?

Thanks President-Elect Barack Obama!

President-Elect Barack Obama has a new website to tap into all the engaged voters who participated in the process and helped make November 4, 2008 one of my favorite days ever.

I took the opportunity to contribute to the Tell Us Your Story section. (Like I have EVER missed an opportunity to tell my story!). I thought I would copy it here, too:

I am a single mother with Multiple Sclerosis.

For almost my entire 44 years, I have always been an accidental activist. When I was 8-years old, my older brother went on vacation for the summer and I took over his paper route. One day, my long hair fell out of my baseball cap while I was collecting for the paper and a customer outed me as a girl to the powers that be at the Hartford Courant. They fired me because girls were not allowed to have paper routes in 1972. I fought back and was allowed to continue until my brother returned.

Due to my father’s work and his untreated alcoholism, we moved around a lot when I was growing up, (I’m grateful to report that he and I have both been clean and sober for many years now—one day at a time.) When I was 10, we moved to the Midwest to what my parents didn't realize was a very racist community. It was one of those welcome-wagon kind of towns where the last new neighbor brought a pie over to the home of the newcomer. So, when a new family moved in next door, my mother baked her requisite pie and brought it over. I was excited because the family had children around my age. I wasn't quite sure what was going on when the other kids in the neighborhood started calling me a "Ni&&er Lover." My parents tried as best they could to explain this kind of hatred and bigotry but basically they left it to me to deal with the other kids. I walked to school with my new neighbors every day until we moved again. My only other memories of that particular town include a corn eating contest and a cross burning at the side of the road.

When I was 15, I worked as a farm laborer in the summer for a cigar tobacco company. The boys made 25 cents more per hour for picking in the fields. I was bored in the sheds (the girls' domain) and asked to go in the fields. I was told that girls could not pick tobacco. By the time I finished quoting the Constitution and threatening to contact the National Organization for Women, my female friend and I were picking alongside the men and making the higher hourly wage. I wouldn’t want to give anyone the impression that I was particularly strong or equipped to do the work of strong men, but that doesn’t mean that SOME WOMEN weren’t able to do it. I didn’t let my poor health habits or physical weakness stand in the way of fighting for my feminist principles.

So, when I was diagnosed with MS in September 2007, it was not out of character for me to take action. I started writing and researching and felt a lot of hope when I learned about embryonic stem cell research and the hope it held for people with MS and other neurological diseases, diabetes, and spinal cord injuries. I felt extremely fortunate to have been diagnosed at this time and place in history. It was a new century! Science had advanced in leaps and bounds. A cure was on the way! Imagine my surprise when I learned that the Bush Administration and McCain/Palin radically opposed using embryonic stem cells for medical research because it would “endanger human life.” What about my life? What about the life of a child with diabetes? What about the life of a person with a spinal cord injury?

I have a friend who conceived her beloved son through invetro-fertilization. Last year, her husband, who is considerably older than her, had a heart attack and they decided they didn't want to have future children that he probably wouldn’t see grow up. The fertility clinic still has frozen embryos in storage. Under the Bush administration, my friend can let them languish in the freezer until the clinic kicks them out; they could throw them in the garbage; or possibly donate them to be implanted in a stranger. My friend would not have been able to say, "There are millions of children already in the world who need homes. Those potential donation recipients should adopt those children. Rather than have my DNA implanted in someone else and grow into a child that could take the place of one of these abandoned children, I'd rather donate those cells to help cure my friend from MS."

I support almost all of Barack Obama’s policies (I’m kind of disappointed about his stance on gay marriage but I’m convinced that he will listen, learn, and be willing to change his mind on that one). I admire Barack Obama’s ability to build bridges and to listen. I believe that what our country needs and craves and voted for is a leader who can bring together people with different views and help them find common ground. I believe these skills will improve our abysmal reputation in the world. For the first time in a very long time, I am proud to be an American.

Embryonic stem cell research, though, is the single issue that drove me to New Hampshire to campaign on behalf of Barack Obama. It’s what convinced me to knock on strangers’ doors and listen when they expressed concern about his readiness for the Oval Office. It’s what clamped my lips shut when someone expressed opinions different from my own (not an easy thing for me). I followed his example and tried to listen and rationally present other ideas. I really felt like I made a difference when a young mother took a voter registration card and a man who said that he was voting for McCain at the start of our conversation changed his mind by the end and said, “Well, thanks you guys. I think I need to look at Obama a little harder. I didn’t know that about his economic plan.”

It was the issue of stem cell research that drove me to host a party to call people in swing states on behalf of Barack Obama. It also brought me to others’ Obama calling parties; convinced me to donate money (that I’m not exactly rolling in); to put bumper stickers on my car and on my desk; to raise money; to write; to blog; and to social network in support of Barack Obama. In other words, like many people across the nation, I joined the movement. I do not have control over the world, but I do have one voice, and one vote. We all do and I tried to spread that message. I got all of my younger friends and my friends’ children to register and to vote…some for the first time. I walked the walk instead of just talking the talk.

I am thrilled that my candidate, Barack Obama, has been elected President of the United States. I supported him before the primary so this isn’t a case of feeling like the lesser of two evils won. Some of my friends were surprised that I was not supporting Hillary Clinton because she was a woman. I would love to support a woman but she was not the right person for the job. My vote for Barack Obama was not because he is an African American. It’s because he is the best person for the job. I am grateful and proud that MLK’s dream has come true and that a Black child can grow up and be president but that is not what I am most proud of. I am proud that we all kept hope alive. I am proud of Barack Obama but I am also proud of US. I can’t but WE can. He is a great man but, more importantly, he inspires others to find their greatness. He built a network and there are scores of people who now feel engaged in the political process. In my humble opinion, Barack Obama is already one of the best presidents for accomplishing that goal.

My Gratitude Fix O the Day

Steroids and GObama!

Sunday, November 2: MRIs--three hours with lumbar, cervical spine, and thoracic spine scans.

Monday, November 3: Started IV Solumedrol treatment. Came home and crashed afterward.

Tuesday, November 4: Day #2 of Solumedrol treatment. Voted with kids. Barack Obama elected President of the United States. For the first time in a long time, I felt proud to be an American.

Wednesday, November 5: Third and final day of my Solumedrol infusion. Really enjoyed walking in after President-Elect Barack Obama beat McCain. The Infusion Clinic full of Republican nurses told me they wanted to call in sick knowing that I would come in grinning. I held back the "Na-na-nana-na" but I did say "YES WE DID!"

Last Minute Laughs and Emerging from Denial

I need to go to bed but I simply HAD to repeat the news teaser I just heard as I was turning off the TV. "Dying for an MRI?" said the announcer. "Coming up on 7 News, the hazards of this popular procedure."

POPULAR PROCEDURE? Do people with MS have a choice?????They made it sound like it was liposuction or botox??????!!!!!!!!

I am not someone who overreacts to sensational news stories and I am not afraid of getting an MRI, but I do think I will have to write a letter to this CRAPPY news station. Popular procedure, my a$!

On a somewhat related note...I may be in relapse. I have pretty bad leg pain that has been getting worse over the last several days. After meeting with my therapist (do you think I got this mentally healthy all on my own?), I realized that it can't hurt to call the neuro but it could hurt to NOT call. If I am in a relapse, there could be residual nerve damage if I don't address it. This sucks but ignoring it doesn't make it suck less.

So I called and left a message for my neurologist's office. Not the new one who I will see on December 3...this is the old one who is mad at me for not following up with the urologist. More to come, I'm sure. It seems that, although I closed my eyes and clicked my heels together three times, my MS has not disappeared.

YES WE CAN!!!!

I live my life by a few simple philosophies. I try to accept the things I cannot change (like everything except my own actions) and change the things I can. In the realm of politics, I've had a whole lot of practice with the former these last 8 years. No matter how much I wish otherwise, I have absolutely no control over George W. or his cronies or the results of their decisions (war, diminished reproductive and civil rights, crumbling economy, the whole world hating us, etc., etc., etc.)

I do, however, have a voice and, no matter what, I use it. For the last several months, I've been able to join my voice with others and direct my "courage to change the things I can" toward doing everything in my power to get Barack Obama elected.

I have hope. The person who I believe can and will be a great president has made it this far. I supported him in the primary. I supported him when I used up all my spoons to go up to New Hampshire to go door to door to talk to undecided voters on his behalf. I supported him when I invited people into my messy home to call MoveOn.org volunteers in North Carolina in the hopes that they would get out the vote in that critical swing state. I supported him when I donated the small amounts of money I could to his campaign. I support him when I write and blog about my political beliefs and share what I read, hear, and see with others. I support him when I stay involved and aware. I support him with the bumper stickers on my car and the magnet on my bulletin board and screensaver on my computer at work. It isn't much but it's everything.

If Obama doesn't win next week, I don't think he will lose to McCain. I think he will lose to a much more sinister opponent: Apathy. Please vote on Tuesday. For me, for you, for our children, for the world.

Defective Brains

One day last week, when I picked Ruby and Zane up after school, they were both playing on the playground. When Ruby saw me, she ran toward me with a little girl in tow, very excited to introduce me to her new friend. They had just met because Miranda had just started her school year. She had a pretty good excuse for missing the first 6 weeks. She was having brain surgery.

Miranda is a beautiful little girl with big blue eyes and a bald spot on the top of her head. She was wearing a bandanna but I could see gauze poking out from underneath. When Ruby told me that Miranda was recovering from brain surgery, I started babbling nervously about how horrible MRIs could be, how it's cool to see a picture of your brain, and other stuff I don't remember. I think it was because I felt an instant kinship with Miranda and I was trying to explain that. I wanted to let her know that I had a defective brain, too.

Her very nice parents arrived to pick up Miranda. After some chit chat and more babbling, I finally asked why Miranda had brain surgery. Her parents told me that she had a potentially fatal defect on her brain that was only found when she volunteered for an MRI study. She was part of the healthy control group to compare with the MRIs of children with diagnosed depression. After the MRI, though, they learned about the defect and that the treatment involved brain surgery.

Miranda volunteered for an MRI and ended up with a venal defect in her brain and surgery on the horizon.

I went to the doctor with what I thought was pink eye and ended up with MS and a whole lot of uncertainty about my future with a progressive neurological disease.

We are both very, very lucky.

News Flash: I Still Have MS!

Be forewarned: This is a bitchy post that doesn't come around to my usual Pollyanna perspective at the end.

I recently read a post by another MS blogger that reminded me why I began Maybe I'm Just Lazy and what I still need to write about.

I'm not beating up on myself. Politics and fun are both very important to me and the world. But MS AND MY LIFE is what I need to write about. It's what prompted me to dig down and find my writing voice again. McCain and Palin will continue to spread hate, dishonesty, and intolerance; Obama will be elected President; and I will still have MS.

On her blog, Empire No More, PunkRockFairy (I'm assuming that's not her real name) wrote an incredibly poignant and elegant piece about how MS has reeked havoc on her confidence. By the time I finished reading the post, tears were running down my face. As I told the author, I cried not because I felt sorry for her but because I knew exactly what she was talking about.

When people ask me how MS has affected my life, I usually try to describe how it's robbed me of my sense of invincibility. I used to think I could do anything. Now I'm not so sure. I used to be freakishly strong. I was the person who carried the heavy box alone and who could always open the really hard-to-open jars. I did not need help moving furniture around and I could install and remove an air conditioner all by myself. Not anymore.

While I've never been especially graceful, I didn't usually trip over my own feet. Sometimes I do now. Before MS, I usually managed to carry my iced coffee to the car and then into work without incident. That is no longer a given and I've dropped more iced coffees than I'd like to remember in the parking lot at work or next to my car at home.

Before MS, I'd like to think I had the ability to effectively communicate my ideas and thoughts and that I was pretty eloquent in expressing them. That is not always the case now. I sometimes have to search for the word that I am thinking. I know the word but I sometimes lose it temporarily or mix it up with another word and don't realize until the wrong word comes out of my mouth.

I used to have pretty good vision. I was 30 before I started wearing glasses and then only for driving at night. Today, I REALLY don't like driving at night and, if I have to, I have to either close my bad eye or wear a patch over it. I used to love shopping. I could spend HOURS in Building 19 or Ocean State Job Lot or other stores that had a plethora of bargains. Now, because of Uhthoff's Sign, I have trouble walking and seeing at the same time when there is a lot of visual stimulation. Unless I know the store by heart, I can't find a particular department even if the signage is pretty prominent.

I can no longer hold it. Yes, that's right. I'm talking about the thing no one with MS wants to talk about: the dreaded bladder dysfunction. When I feel like I have to pee, I better be close to a bathroom and it better be available. I have too much pride to describe this symptom in detail in this forum. Suffice it to say I laughed harder than the average person (and a little uncomfortably) when I saw David Sedaris' Stadium Pal reading on Youtube. While it sounds somewhat horrific, I'm not sure the Stadium Pal is any worse than the alternative. I'm a new fan of Mad Men and, when I had my own little On Demand marathon the other night, I didn't laugh when Freddie peed his pants while drinking at work. I know he was drunk and I know it's fictional (I haven't completely lost my grip on reality), but it was really, really sad to me. Come to think of it, I probably peed my pants in public when I was drinking, too. But I digress. Bladder dysfunction sucks under any circumstances and, when you are a 44-year old woman who would like to think she's still relatively youthful and, on a good day, kinda hot, it's very, very degrading. One minute, you're enjoying the appreciative glances from the 40-something hottie in a Saab in the next lane and the next minute, you are doing the pee-pee dance outside the single stall in the women's restroom at Dunkin Donuts, considering tackling the old man with the cane out of the way as he enters the men's room next door.

And then there's the whole spoons thing. I have a finite amount of energy and no matter how much I try to pretend it isn't true, I cannot stay up until all hours or do too much one day and not pay for it the next day and sometimes even the next two days.

Have I mentioned the hip and leg pain recently? Some days it hurts and it doesn't seem related to activity or inactivity. I go for a long walk, it hurts. I lay on the couch like a sloth and it hurts.

I see my new neurologist at the Partners Multiple Sclerosis Center next week and I will have to tell her that I rebelled against my last doctor and didn't get the 6-month series of MRIs. I sure showed him, huh?

Ok. I'm done whining now.

I have to start talking more about him and less about her.

Another Single Mom with MS-worth repeating

Not about MS. Not about Politics. But Funny all the Same.

How will John McCain fix the economy if he's one of the people who broke it?

Next up on the runway....LAZY JULIE!

Click here or on the picture on the right to order your tickets for the Women Against MS Fashion Plates luncheon and fashion show to benefit the Central New England Chapter of the National MS Society.

I've been selected to be one of the honorees at the MS Society’s Women against MS Fashion Plates Luncheon at the Boston Seaport Hotel on 11/14. I will be profiled in the event program (along with a few dozen other FABULOUS women with MS), there will be a table named after me, and I will be one of the models in the fashion show of Lord & Taylor & Jones New York clothing (they are even doing my hair and makeup!).

This fundraising event will also feature raffles of some pretty awesome prizes, including a trip to NYC, spa packages, and more. The tickets are rather pricey at $100 each but you will get a delicious lunch from the Seaport Hotel and help a cause that is near and dear to my heart—finding a cure for Multiple Sclerosis.

My very close and generous friend, Christina, has agreed to buy my daughter‘s ticket and accompany her to the event. I'm thrilled that Ruby will be able to see her mother celebrated for the authentic way I deal with my MS (mostly with humor and over sharing through my writing).

If you will be in the Boston area on November 14 and can afford the ticket, I would love to have you join Ruby and Christina at the Julie M. Baker table. If you will not be in the area, I would encourage you to visit the website anyway and make a donation in my name. If, like me, you tend not to have extra money to financially support even the causes that you really care about, then please send me your positive vibes/prayers/good wishes that I will be graceful on the catwalk.

If you buy tickets, please make a note somewhere that you’d like to sit at the Julie M. Baker table.

Thanks very much for your support—financial and moral.

10 Nice Things to Say about Sarah Palin

Since I spent all day Saturday canvassing for Barack Obama in the swing state of New Hampshire, I'm feeling really energized and hopeful about the election next month.. When I'm feeling good about the direction of my candidate, it's easy to throw a bone to the other side. In that spirit, here you go. The Women's Media Center's 10 Nice Things to Say About Sarah Palin.

Here Comes The Ex...All Dressed in White.

When I pulled up in front of my house after grocery shopping last night, Mr. Ex was already parked outside to drop off the kids. Ruby came running up to my car window to tell me that she had something very exciting to tell me. I asked her what it was and she said she wasn't allowed to tell me until Daddy left. (I'm guessing the delay was his idea.)

The big news? He is engaged to be married. He proposed to his girlfriend on Wednesday night with a ring...I believe on bended knee. Yup. The man who used to be my husband is now going to be married to someone else. He is going to have a wife who, I would guess, will take his last name (something I never did).

Ruby went on to tell me that she is going to be a flower girl and that she and her soon-to-be stepmother will purchase and wear matching dresses. Zane will be the ring bearer and will dress the same as his Daddy.

I am very happy for Ruby that she gets to be a flower girl. That's one of my childhood dreams that was never fulfilled. (What's the age limit on flower girls, I wonder? If anyone is in the market for a 44-year old flower girl, please let me know.) I'm also happy for Zane because he really enjoys wearing ties.

So, how do I feel? I was surprised to hear about the engagement ring. I didn't get one when we decided to get married. Nor did I get a proposal, actually. I think someone just said, "If we're ready to have a kid soon, should we get married?"

They are getting married this summer in Maine...either on the beach or at the "zagebo" (Ruby's initial pronunciation of gazebo.) I did not have a wedding, but I did get married in a zagebo in front of the town hall that I pass every day on my way to work.

At the time we eloped, I didn't want a proposal, a ring, or a wedding, but now I think it was because I didn't believe I deserved those things. Also, I am a card-caring feminist and I didn't know how to have a wedding and cut out all the sexist crap I didn't want to include. I also didn't know how to not invite my mother. So, we eloped to the Milton Town Hall. The Town Clerk who married us suggested we use the gazebo out in front of the building right on a main street. A firetruck tooted its horn at us during the "ceremony." Our "attendants" were Wendy and Hicham, visiting friends who found out we were getting married when we showed them the license about 30 minutes before our appointment. I wore a pinkish/purple sundress and little white sneakers. Mr. Ex wore shorts and sandals.

We went out to breakfast afterward at Newcomb Farms and then went swimming at the Cunningham Pool. We also went to see my friend Alex Dolan and his band at the time. I think they were playing somewhere on Landsdowne Street. I remember I got to pull open the curtain. I also remember dancing a lot but not with my new husband. He threw out his back a few days before we eloped and was in too much pain to dance.

So, how do I feel? Weird! The consensus among all but one of my committee members is that my feelings are very normal, whatever they are, and that I'm supposed to feel weird. Apparently, it is universally weird when an ex-spouse remarries. So, what is underneath the weird, I wonder?

Am I jealous? Not of his girlfriend, for sure. I do not wish to be with Mr. Ex. I was married to him, I asked for a separation, we got a divorce, and I'm very glad we are not together anymore. Been there. Done that. I do think, however, that I might be envious of the fairy tale. I don't want the ring/proposal/wedding right now but I think I may want it all someday. Or maybe I wish I had it? Or maybe I want to want it someday....?

I know there is no competition. So, why do I feel like he won? I truly want him to be happy if for no other reason than his happiness will improve his dealings with me and prevent angry stuff with the kids. I truly believe our relationship ran its course, we outgrew each other, did everything possible to make it work before giving up, and are way both better off with other people. So, why the envy? Is it because he is remarrying first? Do I want to remarry? Ever?

I love Ken and, although I do not know what the future will bring (particularly if Obama doesn't win the election!), I feel loved, heard, and respected in my relationship. That is real.

It is also real, however, that we are not ready to live together much less remarry. And sometimes, when issues of politics and parenting come up (the double P dilemma), I wonder if we ever will. Don't worry. This will not be new information for Ken when he reads the blog. I am nothing if not a good sharer of my emotions.

I know that comparing my relationship with Ken with Mr. Ex's relationship with his fiance is comparing my insides to the outsides of someone else and that never works. It's not a valid comparison if you don't have equal amounts of information about the two things you're comparing.

Hey! I just realized that, after he remarries, I will become a First Wife....by doing absolutely nothing. No application, no interview. That sounds very important doesn't it? There was a movie, too. First Wives Club. Do I get to join that club even if I don't want to break up his relationship? Are there club dues? Where are the meetings? Is there a secret handshake?

How Do You Pass the Rescue Bill? Add Money!!

I just read this NPR article regarding the bailout package that just passed the House. The results? The stock markets dipped dramaticallyl....again.

Mooooo McCain

mav·er·ick (mvr-k, mvrk)

n.

1. An unbranded range animal, especially a calf that has become separated from its mother, traditionally considered the property of the first person who brands it.

2. One that refuses to abide by the dictates of or resists adherence to a group; a dissenter.

adj.

Being independent in thought and action or exhibiting such independence: maverick politicians; a maverick decision.

---

[Possibly after Samuel Augustus Maverick (1803-1870), American cattleman who left the calves in his herd unbranded .]

The American Heritage® Dictionary of the English Language, Fourth Edition copyright ©2000 by Houghton Mifflin Company. Updated in 2003. Published by Houghton Mifflin Company. All rights reserved.

---

She Knows How to Follow Instructions!

Post VP Debate Concern

Hi, My name is Sarah Palin and I am adorable. When I'm afraid you start to forget that fact, I will smile, tip my head and, even wink. I am going to control the conversation by bringing it back to the jobs, jobs, jobs, energy, energy, energy, because those are the topics that I rehearsed the most. I will be folksy and cute and talk right to middle America via the camera. I will talk really fast so hopefully people won't notice when I called my opponent O'Biden and said that there was toxic waste on Main Street that filtered down to Wall Street (instead of toxic waste on Wall Street, filtering down to Main Street.) .

I will continually mispronounce NUCLEAR so it sounds like a dessert. I will wear a black suit and neutral-colored lipstick so you think I'm smart and serious. I will breathe a sigh of relief when the moderator does not ask me about abortion rights or embryonic stem cell research. I will present myself as being from a diverse family because I have a 3rd cousin who's a redhead.

I think she won by not spinning COMPLETELY out of control. I think he won by showing his passion, intelligence, humanity, and knowledge. Most of the pundits are saying he won. But what about middle America? Will they recognize how well-rehearsed she was? I think she scares the crap out of me. Imagining her as McCain's VP seems absurd. He has had melanoma 4 times and would probably die within a year or two. The idea of her being Prez is ridiculous. She isn't running for that office but she may inherit it while in waiting.

In the meantime, I plan to join MoveOn.og, on a trip this Saturday. I will canvas on Obama's behalf in the nearby swing state of New Hampshire.

DON'T VOTE!

I'm not sure what's going on with my videos lately but I'm aware that there's no sound. Grrr. Try this one.

Do you know the deadline for voter registration in your state? If not visit: here.

I'm all about giving.

I received this email from a number of friends and thought I'd share it here:

Make a donation to Planned Parenthood in the name of John McCain and/or Sarah Palin. When you make a donation to Planned Parenthood in someone's name, that person will receive a card stating that a donation was made in her/his honor.

This is brilliant!We can financially support a beleaguered organization that protects a woman's constitutional right to choose what to do with her own body AND
protestthe threat to female rights by one of our own.

Here's the link to donate.

Use the McCain/Palin headquarters address:

1235 S. Clark Street
1st Floor
Arlington, VA 22202

I've received some feedback that I have abandoned my focus of MS and life and, in its place, I've used the public forum of my blog to spew my ill-informed political opinions. Ya, so? Remember: McCain and Palin do not support a woman's right to choose, their foreign policy will keep us in Iraq longer and will make our enemies hate us more; and they do not support embryonic stem cell research which is the best hope for a cure to MS. Please register and vote for Barack Obama and Joe Biden.

More evidence of Tina Fey's comic genius!

More evidence of Tina Fey's comic genius:

The Antidote is Your Vote

Ooooh. I'm a poet and I didn't even know it!

One 72-Year-Old Hearbeat Away from the Presidency of the United States

You have got to be kidding me! The VP debate is going to be like watching a slaughter!

L'shanah tovah!

It's Rosh Hashanah and time for Jews to atone for mistakes and change the behavior moving forward. Since I'm Unitarian and we embrace the best of all religions, I felt the need to mark this important time in the Jewish calendar. But, because I am me, I will do it in my typical fashion.

Enjoy.

Post Debate Glow

I just watched the first debate between Barack Obama and John MCain. Clearly, I had a bias going in but, since this is my blog and the election is very personal for me this year (see embryonic stem cell research posts below), I will tell you why I think Obama "won" the debate. (If you have a different opinion, you can comment here or feel free to start your own blog. They're free, you know.)

Barack Obama did a fabulous job presenting his strength as a bridge builder. He is someone who will talk and listen to people (and nations) with different beliefs and perspectives, not just people who are already like-minded allies of the US. He clearly sees the US President as an important role model, peaceful coalition builder, and leader in world politics. His opponent, however, seems to think that the President should be the chief evangelist on a mission to spread American democracy, capitalism, and exploitation of all the earth's resources.

To me, Obama came across as smart, thoughtful, personable, innovative, and calm in the face of adversity, even after McCain insulted him several times via comments to Jim Lehrer. McCain never full embraced the freer style of this debate which allowed him the opportunity to address Obama directly. McCain actually never made eye contact with Obama. Weird.

I've decided to draft a post-debate letter to Senator McCain:

Dear John,

I saw your debate with Barack Obama tonight. You know--the one you were going to cancel while you played party politics in Washington? I guess it's been a pretty shitty week for you. First you said that the US economy was fundamentally sound, then there was a major crash on Wall Street. Then, although you suspended your campaign to rush to the nation's capital to finalize a bailout plan, you actually helped obstruct the plan and ended up showing up at the debate anyway. Bummer.

Thank you very much for your many, many, many years of service. I would like to suggest that, instead of spending your final years in the Oval Office where you'll make the rest of the world hate us even more and put more soldiers into harm's way, and invalidate as many constitutional rights as possible, that you instead focus on getting help for the post traumatic stress syndrome that I imagine you are suffering from the torture you endured as a POW. If you love soldiers so much, become a peer counselor. A bracelet and a story of a dead soldier's grieving mother is talking the talk. Trying to bring peace is walking the walk.

I don't really care what your opinion is on abortion. When you grow a uterus, you will have a right to have and express your opinion about reproductive choice. Until then, no one cares what you think. Just keep your hands and laws out of my womb.

Regarding embryonic stem cell research, all I can say is WTF? Neurologists are currently proving that the embryos that would otherwise be thrown in the trash, hold the hope of a cure for MS and other diseases. Why do you reject this exciting scientific discovery? Do you think infertile couples that don't use all the embryos they create, should simply discard them? What about the legal right to abortion and the embryos that are trashed after a pregnancy is terminated? If you believe that embryos are a precious life to be protected, how do you justify putting them in the garbage rather than using them to improve the life of a living, breathing, viable human being?

And, let's talk about the environmental ramifications of your energy plan. You say "exploit our national resources," but what you really mean is drill, pillage, kill polar bears, and generally desecrate the planet. Have you heard of something called wind power? And did you know that, in other countries, there are plug-in electric cars and not just hybrids that still bring in bucks for the auto and oil industries.

Thanks, too, for sending health care back to a bad, bad place of deregulation where poor people may die if they can't afford adequate care. You want to reorganize health care so people purchase their plans across state lines, but what happens to the people who don't have as much to spend? Their insurance premiums skyrocket (if they are lucky enough to have insurance) and they only seek medical attention in an emergency when the problems are more life altering with bills to match.

I'll close this letter with one of the nation's most pressing and timely topics: economics and the crisis in the financial, credit, and housing industries. Screw the people who have lost their retirement funds; jobs, savings, homes--let's pay the CEOs on Wall Street billions more to "fix" what they broke. Seriously, John?

I want the United States to be peaceful and prosperous. I want my country to be a world leader and a friend to other nations. I want all people, regardless of gender, sexual orientation, disability status, ethnicity, religion (or lack thereof), or bank account to have the rights that are afforded us in the US Constitution,

Thanks anway, John. I'm still voting for Obama.

Love and Kisses,

A Proud Registered Voter

Don't Wear Your Vote on Your Chest on Election Day!

I found this interesting cautionary note you may want to read before getting dressed on Election Day.

I wonder if they would give me trouble for wearing my T-shirt with an image of George W. talking into an iPod. There's a version of the Macintosh apple logo with the tagline: iDiot. I love it and it only cost $1 at the Boomerangs thrift store to benefit the Aids Action Committee.

Hmmmm. To be on the safe side, perhaps I should just wear my peace sign shirt. OOOOOH. Or, I could wear the T-shirt I make to be Sarah Palin that says, "I'm a foreign policy expert. I can see Russia from my house!"

Being Julie Baker

"You're no Anne Lamott."

Those were the words that completely and totally energized me.

They were spoken by a published author and an old friend of one of my closest committee members. I like and respect this woman's writing a great deal which is why I was even talking to her about my book at a Lobster Bake in Maine a couple weeks ago. She asked me what my book was about and, in an attempt to encapsulate the theme, I said that it was a collection of essays and a journal of my first year with MS. I added that I wanted my book to speak to people with MS the way that Anne Lamott's Operating Instructions spoke me when I was a new mother and when I have Terrible Mother attacks now.

Believe me. I know that I am not Anne Lamott or even in the same league. I was trying to explain that I wanted to be authentic, brutally honest, and beautifully human about my MS in the way that Anne Lamott writes about being a single mom in Operating Instructions. I admire Anne Lamott's ability to tell the truth even when it's embarrassing. Especially when it's embarrassing. She digs deep and finds the ugly stuff, the stuff we don't want people to know, the stuff we don't even want to know about ourselves, and then she writes about it and puts it out there for all the world to see. And then, it's ok. It's ok that she feels all that ugliness which makes it ok for us to feel it, too. And that's when the magic happens. The ugliness becomes beautiful.

Anne Lamott is my Lance Armstrong, my Pavarotti, my Meryl Streep. She is the best at what she does. She is the best at what I want to do.

So....when I heard that I was no Anne Lamott, I felt ashamed. I worried that I was trying to be something way beyond my abilities and talents. I thought "Who are you kidding, Julie? Of course you're no Anne Lamott! Why don't you just write your marketing copy and be happy with that!"

But, you know what? Those feelings passed. The negative self talk slipped away and I took all that energy that I once used to tear my self esteem to shreds and focused it on making positive connections and taking steps toward getting my book published.

Although I have aways feared "networking," I started reaching out to all the people in my various social and professional networks and asked for advice and encouragement. And I got it! I even sent emails to writers I admired to make new connections. Several responded to my requests to add them to my network. Other writers offered to be my readers/editors; a former co-worker turned life coach promised me three free sessions; a friend who just launched a PR agency offered to promote me and the book; others gave me the names of books and websites to read and visit for more information; and several people offered to connect me to their agents and/or publishing contacts.

This woman was right: I am no Anne Lamott . But you know what? I am Julie M. Baker. I am me and I'm going to make the most of that. Life is way too short to focus on what I'm not and what I can't/shouldn't do.

Now is better than never.

Make Your Voice Heard!

Take this PBS poll about Sarah Palin's readiness.

Tina Fey is a Comic Genius!

The Eternal Question

Is this MS or just age, lack of sleep, lack of exercise, stress, or _______________ (fill in the blank)? I am so tired that I literally closed my eyes and fell asleep for a few seconds in the bathroom stall at work this afternoon while taking a pee. I have floppy head syndrome (my name for the feeling that my neck is not totally holding up my very heavy head). I felt tingling in my right hand and my eyesight isn't great (I thought my coworker who sits maybe 10 feet away was eating a muffin and she was actually biting into an apple). I'm going to wait a bit before calling the neuro because he told me to call after symptoms lasted for 3-5 days. I'm trying to stay in the day and not imagine the steroid infusions, MRIs, etc. Just for today, I am taking my syringe of Rebif up to my room, giving myself my shot, and going to sleep.

Massachusetts Primary Day and 49 Days to the Presidential Election

Someone just sent this very interesting side-by-side report showing the different Presidential candidates' health care plans.

Boob Tube Tears

Was tonight's episode of One Tree Hill really that sad or am I just hormonal? Was it really good scriptwriting or was I looking for a reason to cry? Am I sad? Why am I sad? And why the heck is a 44-year old mom watching teeny-bopper nighttime soap operas?

Unlike many smart people I know, I think TV is awesome. I'm not talking about all the bad stuff: advertising, most reality programming, violence, or any of the other scary crap that literally broadcasts the demise of our civilization. I'm talking about fiction....drama...really entertaining stories that allow me to completely lose myself, that make me feel things that are either different or deeper than whatever I was feeling before.

For example...I open the computer to write about how sad I felt watching a bunch of fictional characters mourn the loss of a fictional teenage basketball player and then...TV TO THE RESCUE!!!!!!!!!

I switch the channel and happen upon a movie called Fall and the tears are gone. The feelings aren't gone, though. They just changed. For the better. A lot better. This movie is most definitely not porn but it is very, very erotic in a really smart way. It's about a writer turned cab driver who falls in love with a married super model who is so much more than she appears on magazine covers and runways. They have a very, very steamy affair that reminded me of Kim Basinger and Mickey Rourke in 9 1/2 weeks but much, much sweeter.

Uh-oh. Lots of great sex and love scenes; cool cinematography; awesome music; great street scenes in New York, Madrid, and Paris; and intelligent and funny dialogue. But now I think it's ending sad.

It is. Shit! My novel is going to have to be my channel switch because I absolutely positively need to go to bed....and I'm sad again.

The Sun Will Come Out Tomorrow

I'm very, very tired although I slept most of the day today. My legs and hips ache although I stretched and took a long walk. My eyesight is not great either especially with reading. I'm broke although I have a full-time, good-paying job.

That's the bad news.

But, since I don't plan to be a pathetic woose filling up valuable space in the blogosphere with a bunch of pessimistic whining about having MS and being a single, working-class parent, I will now switch to the good stuff. There is ALWAYS good stuff.

I have a roof over my head and enough food in the cupboards to make it to payday on Monday; Ruby, Zane and I have full bellies (we had turkey fajitas for dinner--mmmmm); my two healthy children are sitting next to me on the sofa watching Harry Potter and The Sorcerer's Stone; I have friends and a boyfriend who love me; I have a job I like; I have a higher power; I'm sober; I have health insurance; I have filled my prescriptions already, I'm going to a Lobster Bake in Maine tomorrow and Ken's driving; and I know that tomorrow is another day.

It's a beautiful day in the neighborhood!

I am special just the way I am and Mr. Rogers told me so!

I don't exactly have a plethora of happy childhood memories so I cherish those that I do have. When I remember something fondly, it makes me feel warm and fuzzy and a little teary-eyed. If that feeling came in a bottle, pill, a powder, or you could roll it and smoke it, I probably would have become addicted to it. Hmmm. Maybe that's what I was hoping to find in that bottle, those pills, those very skinny cigarettes, and that powder.

But I digress. Mr. Rogers was one of those warm and fuzzy spots in my childhood and, when my friend Liz sent me this picture of his famous sweater from her visit to The Children's Museum of Pittsburgh, it triggered my fond memories of this geeky minister on public television.

I moved around a lot growing up but I know that when I was four-years old, I lived next door to Tracy Ferresso. I remember that Tracy's dad was a really nice guy and that he had baby chicks that hatched from eggs in the garage. I also remember that Tracey and I got in very big trouble when we had a yard sale and sold our parents' belongings--or maybe it was just me who got in trouble. I also remember that Tracy went to preschool in September and left me all alone.

I asked my mother why I couldn't go to preschool and she told me that it was to teach children how to read and, since I already knew how to read, I didn't need to go. I think she told a bit of a fib but I kind of get it. The year I was 4, my older brother, John, was in first grade; Laurie was only 2 and Tom was a year old. So, I can only imagine that preschool cost money that my parents didn't have or it would have been a logistical nightmare to organize dropping me off and picking me up with two littler ones.

So, every day, I was all alone with no one to play with. I'm sure my mother was taking care of the little kids and I spent time alone, reading and watching PBS. Mr. Rogers and Sesame Street were my companions.

I've been told that, when Mr. Rogers took his dress shoes and jacket off and put his sweater and sneakers on, I mimicked his moves. Then, I talked to the television. When Mr. Rogers greeted us with "Well, hello! How are you today?" I responded, "Fine, thank you."

And when Mr. Rogers sang, "Won't You Be My Neighbor?," I sang along. I loved when the trolley traveled to the Neighborhood of Make Believe with King Friday, Queen Sara, and Henrietta Pussycat, I went along.

Throughout each show, Mr. Rogers reminded me that I was special just the way I was and that he was proud of me. He also taught me how to be kind and that it was ok to have my feelings and talk about them.

For a child that grew up in my chaotic household, these were revolutionary concepts. But I believed him!

So, when Saturday Night Live skits and other comedians made fun of Mr. Rogers, I never laughed along. I LOVED Mr. Rogers.

When I worked on ARTHUR at WGBH, I was very excited to learn that Mr. Rogers was going to be animated and voice an episode. In the story, Arthur is embarrassed when Mr. Rogers comes to stay in the Read home. He's afraid that his friends will find out and make fun of him for watching a baby show. Naturally, Arthur learns that everyone likes Mr. Rogers and, more importantly, people who like him, will like him just the way he is.

The really cool part was that Mr. Rogers came to WGBH after the episode was completed. Because he is so popular, Children's Programming decided that only people on the ARTHUR Team could go to the gathering where he would be. Thank goodness I was on the team!

I showed up as soon as the doors opened and got a seat near the end of the large conference table where Mr. Rogers would be sitting. I felt like I was waiting for a movie star or the pope or something! Mr. Rogers did not disappoint. He thanked all of us for the experience, told some stories I don't remember, and was generally just his very sincere, very sweet self.

Then, he stayed in the room to greet every single person individually. When it was my turn, I approached him nervously and reached out to shake his hand. He took my hand in both his hands and before I had a chance to say anything, he told me that he saw me in the group and he really appreciated how I smiled and was so clearly listening to everything he said. He told me that he was always a little nervous meeting new people but that my smiling face made him feel welcome and comfortable.

I couldn't believe it! I told him that he was a very important part of my childhood and that I remembered my time with him on TV each day very fondly. Then he said it. "You are very special just the way you are and I am very proud of you."

I'm really glad I didn't die in that moment but, if I did, I would have died happy.


When Mr. Rogers died a year or so later, I cried and definitely felt the loss of such a wonderful man. A few months after that, a woman on the ARTHUR team was leaving WGBH and found a photo of that very special moment when Mr. Rogers held my hand in both of his and told me that I was special. How lucky and I that one of the best meetings in my life was photographed for posterity! (Forgive the quality of this image. I had to take a photo of the original that's on my fridge.)

I will leave you with the man himself.